The vast majority of the 55 million people in England whose GP records will be shared with third-parties within weeks under a new NHS Digital scheme are unaware of the plan due to a “total lack of engagement” from NHS Digital, according to BCS, the Chartered Institute for IT.
Announced in May 2021, the General Practice Data for Planning and Research programme will see GP data scraped at the end of June 2021 and uploaded to a – supposedly highly secure – database from which bodies with a legal basis for doing so can access it.
People are able to opt out of having their data shared, but the process has not been widely disseminated, and may be somewhat onerous on overworked GP practices, adding another burden of administrative paperwork in the middle of a global pandemic.
The data lake will include data such as diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments.
It will also include information on physical, mental and sexual health, data on gender, ethnicity and sexual orientation, and data on staff who have treated patients. It has already been the subject of criticism from privacy experts.
BCS said that the absence of any public information campaign or communication with patients to explain how their data will be used will “erode public and professional trust in digital aspects of the health service”.
Philip Scott, chair of the health and care executive at BCS, said: “NHS Digital don’t seem to have learned the lessons of the care.data fiasco. This is well intentioned and has great opportunities to progress research, but the total lack of engagement to build the necessary public and professional trust is astonishing.”
Bill Mitchell, BCS director of policy at BCS, added: “Ethical use of health data benefits the whole of society – but it is difficult to know precisely who is doing what with this data and the process should be far easier to understand and more visible to the general public.
“In fact most of the millions of people affected will be unaware that this is happening, even if there will be benefits to all of us from the research that NHS Digital is facilitating.
“When new terms and conditions are introduced by messenger apps, at least they pop up on our phones and gives us a chance to review them, even if they are legally complex. Nothing as direct has happened here in terms of advertising and campaigning,” said Mitchell.
Mitchell urged NHS Digital to more wholeheartedly embrace openness and transparency, and called on the organisation to implement “robust mechanisms” for people to check and understand what, exactly, is being done with their healthcare data, and better inform them of significant changes to how and why data may be shared.
In a statement to BCS, NHS Digital said: “We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.”
